MND Awareness Week 2018 – Sharing 7 stories in 7 days

MND is a global problem. It does not discriminate on the basis of race, ethnicity or demographic.

It’s estimated that over 420,000 of the world’s population are living with MND right now. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.

In 2018, Australia’s National MND Awareness Week was held from Sunday, 6 May to Saturday, 12 May. During the week, individual Australian-based MND associations worked together to raise awareness and shared a collective vision of a world without MND. It was also a time to acknowledge the MND community, especially people living with MND, and to remember those who have passed. The MND and Me Foundation developed a 7 Day MND Awareness Project entitled: “Get involved – spread the word.”

The project aimed to reach people beyond the Foundation’s normal contact sphere by sharing seven people’s MND stories over seven days. We encouraged people to share each person’s individual MND story with seven different people each day. Once information about the disease was shared – what it is, what it does, how it impacts people who have MND (as well as their friends, family and broader community) fund raising towards the provision of effective treatments and/or a cure may not seem as distant as it once was.

You can listen to some of the amazing stories from some truly amazing people – stories filled with challenges and courage, heartbreak and hope by clicking on their images below:

VIDEO: ‘Introduction to MND Awareness Week’ by Paul Olds

Paul Olds
CEO MND and Me Foundation

VIDEO: ‘Transitioning Awareness into a Cure by John Hanley

John and Lisa Hanley

VIDEO: ‘Being heard when you don’t have a voice’ by Skye Sewell

Skye and her Mum. Marg

VIDEO: ‘MND forces you to change your life’ by Sean Dorney

Sean and Pauline Dorney

You can read some of the amazing stories from some truly amazing people – stories filled with challenges and courage, heartbreak and hope below:

‘Fighting back’ by Stephen Hunt

Stephen and Patricia Hunt

When I lost my wife and soulmate, Patricia, to this horrible disease in August 2016 – five months after her initial diagnosis, I was both angry and hurt at the same time. I hated what this disease had done to my wife, my family, and my friends and indeed to the community at large.

I hated that other people were facing the same prospect as us – feeling the same as my wife and I when she was with us, and feeling like I had after Patricia finally gained her release from this dreadful disease.

The world lost a beautiful soul and a wonderful giving person when Patricia passed away, and Patricia lost her opportunity to be a loving grandmother to our newly born grandson.

When Patricia was diagnosed, I knew nothing about MND and relied on the home visits of hospital-appointed care professionals to supervise her welfare. I literally didn’t know what I didn’t know.

I took extended leave from work and my obsession to ensure her life was as comfortable, as full and as inclusive as possible quickly manifested. Such was the speed at which MND progressed that in the final months we could see daily degradation in her condition.

I had almost no knowledge of the MND and Me Foundation (MND and Me) and only a vague idea of the existence of the MND Association Queensland (MNDAQ). I certainly, had no idea what these organisations did for people who were affected by MND. The realisation of the scope and value proffered by these organisations only came after my wife’s passing.

It isn’t in my nature to meekly accept what fate hands us. I wanted to both honour my wife’s memory and make a difference to others who found themselves in a similar situation. I could do nothing to stop this disease from taking my wife, but I felt by volunteering my services, my energies to both MND and Me and MNDAQ, I may be able – in some small way – to help the wonderful and dedicated people from these organisations fight the impact of MND.

By me undertaking some of the everyday administration tasks, members of MND and Me and MNDAQ can concentrate on the provision of timely care, support and assistance to Queenslanders affected by this cruellest of all diseases.

I don’t have a fortune that can be used to fund definitive research, nor do I possess Degrees in a health care discipline to directly support people living with MND, but by providing this modest support, I believe I am actively contributing to the fight on MND.

What can you do?

‘Angels of Awareness’ by Pat Kinsella

Pat Kinsella and Angels

My name is Pat Kinsella, I’m 53 years old. Late in 2013 I was diagnosed with motor neurone disease. A disease that has no effective treatment, nor cure.

I was told to “Get my affairs in order”!

After I came to terms with my diagnosis, I decided I wanted to use what time I have left constructively and positively. I wanted to raise awareness of MND and raise funds towards MND research. I’m now part of a MND research program and the awareness idea turned into an action plan – ‘Run For Pat’ was born.

The plan was for me to be pushed in a wheelchair whilst completing the Gold Coast Marathon course. A Facebook page “Run For Pat, Motor Neurone Disease Awareness” was created; a team established; and a training plan implemented. The Marathon was a fantastic experience for all involved – generating awareness and raising $17,000 for MND research!

The Marathon has been run, but the MND awareness MUST continue. The team downsized to three female friends and me, and these friends became my Angels – just like “Charlie” had his Angels! Belinda, Genevieve, Rhiannon and I fly the MND flag together at different running events and Park Runs across Brisbane.

The raising awareness activities have taken me out of my comfort zone on many occasions. I’ve managed to add quite a few new skills to my repertoire including; briefing university lectures, attending MND-related events as a public speaker and MND ambassador, drawing raffles, making a fundraising video (in a flash recording studio) and to top it off – joined with a few “crazies” to jump off a perfectly good bridge for the MND cause!

And why do we do this?

Well, the Angels say that MND is an unforgiving disease that can strike any one at any time of their life. The researchers put a lot of time and dedication into finding a cure and the least we can do is try and raise funds by generating awareness of the impacts that MND has on the community.

The Angels know that MND is a disease that limits function and affects quality of life – not only for the person who has MND, but for their families. The Angels and I run for those who can’t. We have fun and a laugh along the way, giving out high fives where we can – telling everyone we can about MND.

MND has no answers, no date stamp and no positive outcomes. We all acknowledge that one day this ugly disease will win, but until then my Angels will continue to run.

You can follow the Angels on ‘Run for Pat’ FB here:

‘Tackling MND as a team’ by Rhonda Lomax

Rhonda Lomax

I am a 60 year old mother of two adult children who lives with my husband, Gary in our home in Jimboomba. I was diagnosed with MND in March 2017 after first experiencing symptoms in 2015.
The rapidity of my illness meant that I had to give up work in 2015 and Gary had to undertake sole carer and household duties as well as his full time work.

Financially the implications were just as severe – moving to a sole income family, and exhausting my superannuation on home modifications to meet my changing physical needs.
The transition from husband to full time carer of me and the household is one of the hardest things Gary has ever undertaken.

Gary’s day prior to receiving any home care assistance consisted of getting me out of bed at 3am, completing my personal care routine, preparing and assisting me in eating my breakfast, before transferring me to my recliner chair and leaving for work by 4.15am. This is where I stay on my own for up to 12 hours prior to Gary returning home from work.
When Gary arrived home he would attend to my personal care, cook an evening meal, assist me in eating, complete the domestic duties and prepare me for bed. Gary was exhausted at the end of his day. Of course, sleep was not guaranteed either. This routine was repeated 5 days per week.

A partnership between the MND and Me Foundation and the AMA Queensland Foundation changed our lives. Our Reginal Service Coordinator (funded by MND and Me) helped us apply for and receive a Grant from the AMA Queensland Foundation to pay for home care assistance.

The timing of the funding was critical as the NDIS will not roll out in the Jimboomba region until later this year, and government funded Home Care assistance was not available in our area for 12 months.

This Grant has given Gary time to process change – allowed him time to grieve, allowed him time to assess my needs, and importantly allowed him time to adjust to sharing the caring responsibilities of his wife to external care providers.

Practically, this immediate funding for personal care and domestic assistance also means that I’m less likely to be at risk of falls and injury while Gary is at work.
I feel very fortunate that we were able to receive funding outside the existing health system. MND does not discriminate – it will not wait for funding, lifesaving equipment or effective treatments to become available. By creating awareness of this terrible disease, we hope to raise funds to help others in similar situations.

Can you help?

‘Mindfulness vs MND’ by Julie O’Connor

Julie and Bob O’Connor

My friend used to joke and call my husband, Bob, ‘the absentee landlord’ due to the fact that his work in aviation kept him away overseas for weeks at a time. At one stage one of our son’s friends asked him if he even had a father! At the time I was managing a household of four boys, working full time.

Sadly the reality of MND changed this. It now seems that all the multi-tasking and effort to run things smoothly was, in hindsight, a piece of cake.

For the past five years I have had to become accustomed to being a full time carer – with all the associated, and unseen work this involves. 24 hours a day, 7 days a week with no positive prospects to look forward to for my husband, for me or the family.

Being a carer also means trying to continually juggle and adjust – not only to the constant physical changes, but also to the emotional, mental and social aspects of this isolating disease as it takes its toll on my husband.

Comments such as ‘If anyone can do this – you can” or “You’re so strong” are just not helpful. It often seems like no-one understands what it really, really means to be a full time carer.
Thankfully, the MND and Me Foundation – through generous donations from corporate and community members – has been able to provide excellent support to people like me via the Mindfulness Program. This program, facilitated by the very capable and very understanding Samantha, means I can now strengthen my fight against MND.

The Mindfulness tools taught by Samantha offer some sanity, support and relief to the complexity of coping day by day. The sessions have also been a great opportunity to meet with other carers and talk with people who are going through similar situations. This is particularly important as we live in the far North of the State!

We are grateful to the many supporters of MND and Me who raise funds for the unseen side of MND. Bringing the Mindfulness Program to Cairns means we have some armour for our fight against MND.

MND Awareness Week is the perfect opportunity for you to help MND and Me bring initiatives like the Mindfulness Program to regional Queensland.

Our commitment to learn from these stories to progress MND treatment and MND research initiatives

Jane Schmitt
Chairperson, MND and Me Foundation

The MND and Me Foundation is committed to learn from these stories. We are committed to helping create a Queensland where all families living with MND have equitable access to quality services and support. We also understand the importance of continuing to fund MND research, as without research we will never see a world free from motor neurone disease.

The MND and Me Foundation is privileged to have your support as we all strive together to transform the above statements from commitments to reality. Together we can raise the bar to ensure no Queenslander has to face MND alone.

The 2018 MND Awareness Week was very successful. During the week on Facebook alone we reached over 75,780 people, with 18,504 people engaging with the seven posts through comments, Shares or Likes.

We challenge everyone to keep the momentum going.

You can continue being ‘Involved’ by sharing a story, participating in an event, volunteering or donating funds towards MND care and research.

By creating awareness of motor neurone disease, you’ll help create a better understanding of the diverse challenges a motor neurone disease diagnosis brings.

It’s this understanding of these individual challenges facing people who live with MND that translates into funding for MND care and researching a cure.

No one should face MND alone. Get involved – Spread the word.